This blog was started to document our walk through jaw distraction surgery and how it is helping Faith overcome some of the serious issues she has faced including obstructive sleep apnea. After researching jaw distraction surgery, we could only find one other T-18 child to have this procedure done. We hope our story will help other families dealing with Trisomy 18 and we look forward to the day God completes the work He has begun in Faith.

Tuesday, April 5, 2011

Too Excited To Be Still...(Day 30 in the hospital)

Jesi said the last 2 days have been the best 2 days she has ever seen Faith have. She has been laughing and smiling like no other time. Kind of makes you wonder if she is breathing better than ever before. We have noticed that she ignores people when she is dealing with issues that cause discomfort. The video below is from the weekend and not the last 2 days...wish I had video from the last 2 days to see myself.

Faith had a CT Scan today to try to determine the problem with her crooked jaw. She had too much fun riding to the lab and got so excited they could not do the scan this morning. Because they were doing a computer model, they could not use anything to tie Faith down and she refused to be still. So they had to wait until later in the day and had to put Faith under to keep her still for the scan. Once the scan was complete, it was clear what was causing the problem. The right side of her jaw distracted perfected, but the left side had fused and did not distract. I kept asking why it was so tight when trying to turn it. The docs thought it was the hardware turning tightly, but not the case. The bone had fused, or as I like to see, Faith's body healed too fast for them.

The plan...oh the plan...Faith is going to go back to OR sometime on Friday so the docs can go back into the left side of her jaw and separate the jaw bone again (break it) so the left side can be distracted properly. If everything goes as expected, she shouldn't have to remain in the hospital long and instead would be able to go home where we would do the distracting. This is way better news than we first expected. We thought they might have to redo much of the jaw distraction and possibly even remove some of the bone that had just grown in place.

Let's hope we can keep this visit under 5 weeks...that means we need to leave by Saturday.